FEMARA
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My MO told me that taking an AI would reduce my risk of recurrence overall by 70 percent, I think the type of cancer has something to do with how effective these things are, but I'd sure like to see that calculator you're talking about... I didn't have either radiation or chemo so feel that it's pretty important for me to stay on this damn pill. But, that said, my pain has gotten MUCH worse over the last couple of months. My left hip is so bad that I can barely walk, my right shoulder (cannot blame that solely on femara, as I've had shoulder problems for years), but the shoulder is much worse lately. Now my left hand has started aching as well. I was exercising diligently, but the pain in my hip now prevents me from doing much of anything and I'm so totally depressed on top of it. I've been on it for two and a half years now, and I really am not sure if I can make it for another two and a half.
I take a generic form, and my pharmacy just changed the generic, so starting day after tomorrow, I'll be on a new one. I'm hoping the SE's change a little - in a good way, not a bad way...
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It has to do with stage. If you are stage 1, the risk of recurrence is low to begin with. Let's say you have a 5% risk of recurrence over the next 10 years. If femara lowers that risk 15% (making up numbers here), it means that your risk goes from 5% to 4.25%. Big whoop!
If, on the other hand you are stage 3 (like me) and your risk of recurrence is, uhm, a bit higher than 5%, then a 15% reduction in that risk can mean a great deal.
Just ran my numbers in Cancermath. Without femara my 15-yr mortality risk is 33%. With femara the risk is 24%. So that is a 27% reduction in mortality risk.
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Exactly, ladies.
Remember, my risk of recurrence immediately after BMX was 1%! Even though the IDC was multifocal, the combined size of both tumors was 2 millimeters, and nothing was found in the final pathology report.
According to my MO, losing weight reduced my risk of recurrence by 23%, and taking an AI further reduced that risk of recurrence by 50%. So... now it's less than 1%. Stopping Femara will put me back up to the 1% category (as long as I keep the weight off!)
In the very beginning, I brought up the mortality rates and calculators with my MO, and her answer was "Yes, you're right. But would you rather have those extra days WITH or WITHOUT a recurrence?"
What I understood from that was that in cases like mine (very small, very early cancers) it was not so much about the life expectancy, as it was the likelihood of getting a recurrence, or progressing to mets, which we all know does happen to some women, regardless of where they start. They are two different issues, at least in the mind of my MO.
Trust me. If I were in different circumstances - a more advanced stage at dx, or even being a mom with kids - I would do anything the MO told me to. I would even drink skunk juice if she said that would help!
I am still a great believer in Aromatase Inhibitors, and strongly encourage all women who have had them prescribed to at least give them a try. You can't go by what others report as SEs to make that determination in your life. If for any reason, one drug doesn't work for you, see if your MO will give you a break, then try another one, and another one, and another one if you can.
gardengumby - wishing you good results on the brand name drug!
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blessings, YOU have my blessings to quit! i wish my chances of recurring or progressing were as slim as yours, i would quit in a heartbeat, seriously. but i do believe i must, for as long as i can...
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Blessings, I think it makes total sense in your case to quit. Yes, there is a benefit, to you, of femara, but it is miniscule. To me it is the kind of case where if you had no ill effects from the drug, you might as well take it for that extra insurance, but if the drug is messing seriously with your QOL, then I can't see how that tiny advantage is worth it. Keep the weight off, keep moving, and enjoy!
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Thanks, kathec and Momine...
My MO is on vacation and I really did want to discuss this with her, but I called the new Cancer Coordinator this afternoon and had a wonderful conversation with her.
She was SO kind, said that they were there to support any decision I made, and said that I had obviously put a lot of thought into this decision. She said that the most important thing for me at this point was quality of life, and that I had done everything they asked, tried as hard as I could, and now it was time to stop.
She did say that in the future, even a few years down the road, if I changed my mind, I could still try the Aromasin or Tamoxifen, or who knows - they may even have invented a NEW drug that doesn't have the SEs that the AIs or the SERMs have. Wouldn't THAT be nice?
In the meantime, she said "Not that you need it, but you have my full blessing to stop the Femara now." Somehow that made me feel better for having 1) been a "good patient" and sought their advice, and 2) knowing that I had their full approval.
You ladies have all been awesome as I've struggled through this decision!!!
Many, many thanks and xoxoxoxoxoxos.
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Blessing, I am so glad you called and got a reasonable person on the other end.
I agree that it would be VERY nice if they could come up with some new and better drugs.
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Hello,
I was just wondering how many of us on Femara have thinning hair and how do we tell if it's that or as a result of the chemo? Whilst (I guess a small part in the great scheme of things - I suppose?!) my hair is so much thinner than pre bc.
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I was wondering this too, wintersocks. It seems I go through hair shedding much more often while on Femara.
My se's from Femara have increased as the weeks pass. I'm so thankful to have this drug but the se's can be severe especially in the morning for me. My fingers are the most effected with stiffness - I have to bend them to get them moving some mornings. I exercise, which helps but the minute I sit still (not every time), I turn into the tin man.
With all the stiffness and pain from it, how do I know the difference between a serious pain and se pain?
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Peacestrength,
Thanks for your response. Interesting that you say yours is shedding, mine doesn't shed. Rather, it seems to have not come back to its full thickness post-chemo - start Letrozole. Because the start of Letrozole was directly after the finish of Chemo, it's difficult to know which has caused it but my £ is on Letrozole. That's why I am interested in other's 'hair' experiences on this drug.
I have just had my eyebrows permanently tattooed because of the same problem. I simply could not bear drawing them on every day - with mixed results
lol.Yes, I am with you are the sore/fixed and stiff fingers. I have this too. I too exercise, for me this has been the best 'oiling remedy' otherwise I just seize up. I think I ought to invest in one of those chairs that 'tip you out' at the touch of a button! I think knowing the Letrozole pain from other pain, being able to differentiate perhaps comes with time. I am now 3 months off 2 years on it and I can tell.
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I too have thinning hair - and like others, can't really tell for sure if it's because of the chemo or the Letrozole since one started as the other ended. On the other hand, shortly I will need to get my passport renewed. I got it just as my hair started to grow back and was very short. It's hard to believe that five years have passed and the next photo will look more like me (as much as a passport photo can).
I had the sore fingers thing at first too. My hands couldn't ball up into a fist at all and now that is gone. Three more months til the end of the pills and who knows what will improve then?!
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WOW, lassie11! congratulations! just three more months and then you are done? Wow, you made it!!! I hope that when you are done, that you feel great, and that all undesirable "special effects" go far far away.
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Girls, on the question of hair loss..........mine thinned but I did not lose it......I took biotin and that seemed to help. The texture of my hair is now very fine but there is plenty of it.
What we all have to remember is, even though we blame this on Femara, it is actually a natural response to menopause .......as our ovaries shut down our hair thins and gets finer and because Femara then depletes our bodies of further estrogen production in the adrenals and from converting phytoestrogens from our stored fat that natural process is intensified and speeded up that's why we notice it more.
It will stabilise, mine has not gone back to what it was but I'm happy with it.
Good luck all!
Love n hugs. Chrissy
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Lassie11,
Wow, you must be so pleased that you can stop this drug or have you a mixture of feelings? I can imagine having some apprehension at the same time.. It will be interesting to see what happens with your hair and other SE's.
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Chrissy,
Our posts crossed, yes you are right of course we cannot forget menopause in all this. I did however have an early menopause (42) and my hair remained thick until the nightmare of BC. I mean it was really thick. Now I can see my scalp at certain angles. I know it's not the end of the world, but it is just another loss to have to contemplate.
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I have been on L for a little over two years now and I have had a tremendous amount of shedding.
I can't blame it on chemo as I didn't have any and menopause was 17 yrs ago. Like Chrissyb, I too take biotin and it helps slightly.
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Peacestrength, re serious pain and SE pain, I know what you mean.....I have just found out I have shingles in my left leg. At first, I thought it was SE pain, and then maybe flu pain. Even the drug store assistant was wondering if was a SE. I'm seeing my dr tomorrow to check!
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Yes, menopause is
a factor - thank for reminding me of this chrissyb.
Scottie and chrissyb - do you take biotin daily?
Wintersocks - your comment:
"I know it's not the end of the world, but it is just another loss to have to contemplate" really rings true for me.
Tammy - shingles are painful...hoping they resolve soon for you.
Am I understanding this correctly, does the joint pain from Femara get better in some women with time?
Sorry about my spacing issues above.
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Has anyone stayed on Femara --- kind of like riding the crest of a wave.... eventhough the symptoms peaked at one point, .. toughing it out and sticking with it??? I had some dizziness with Femara... that went away... Dizziness began 6 months into taking the drug. Was doing great until 6 month point.
MO changed me to Aromasin... had dizziness with that drug on the onset! So now I am thinking of going back on Femara since I did so well for 6 months.
Someone mentioned that the drug can peak at one point, create uncomfortable SES but if you ride the wave, it should work out.
Comments please...Thank you Diane
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dventi, yes, I have ridden several waves, including a few bouts of dizziness, and 2 years later most of the SEs have simmered down, or else I have gotten used to them. Either way, I am living my life and the femara is not interfering unduly.
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dventi,
I had awful dizziness about 6 months -1 year in. It was horrid when I lay down I felt like my eyes were 'flickering' - kinda like when you have drunk too much (lol)
Like Momine, i have had a couple of waves, but I was able to stay with it. It has largely settled for me and I now just have some joint issues/stiffness issues especially if I am still too long. The hair is thinner as I mentioned but.....
I was an undiagnosed Coeliac for 10 years until I became very sick and finally the medics got it. The issues I had with that were much much worse than anything Letrozole can throw at me. So I just get on with it and I am 2 years in now with that little orange demon! But that's just me...
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i have promised myself to ride those waves, and to deal with those pains, and to stick with it cause i love my life greatly, mostly because i have some outstanding people i love! i am not done making things, or looking at the world! i had better quit complaining and get on with it.
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peacestrength, I took the biotin daily for about a year and in hat time my hair stopped falling and beggar to thicken a bit. It has never returned to full thickness but I have plenty if hair. The joint pain for me is intermittent it comes and goes .......... On those days I just take it easy but I find taking my fish oil for the omega 3 and my Vit D seems to help and they are something I take religiously. It was only in the beginning that my bones hurt but the could have easily been my mets as well as bone is where they are,
Dianne I have had the dizziness a couple of times........it a pain in the proverbial but it does clear as quickly as it comes. I don't really have a choice about staying on it as I'm stage IV I just wish it was around when I was first dx as I was allergic to Tamoxifen and Fareston so it left me with very little options for treatment. After it returned, I was put on Arimidex which was very harsh but I toughed it out until I had another progression and it was then that my doc started me on the Femara. I have had a great response to it and so far no more progression. The SE come and go but I tolerate them so well that I actually ignore them. I have known many women who have changed their meds around to find the one that works best for them and just because I had a bad or a good time with a med doesn't mean that you will have the same response...........we are all so different. Have a discussion with your onc but I think you'll find that because all these meds are in the same family ie Aromataze inhibitors they will all have similar SE. Hope you find the right one for you soon.
Love n hugs all! Chrissy
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I am three months into being on Letrozole daily and my SE are: occasional joint pains in knees, hair loss, little hot flashes( ice cold water bottle placed behind my neck helps to releave this) body bruises easier!
I take Biotin, follic Acid, Vitamin D-3, Calcium & Magnesium daily, Letrozole at night!
On my insurance plan, Letrozole is covered but Femara is not!
Would love responses to this post to learn if their is any differences between the two medications!!
Otherwise I think the SE are bearable, at least for now! Good health to you all
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LovinglifeLALA the only difference between the two is the filler used........the generic brands must by law use exactly the same drug at the same quantity as the original. The reason people get some different reactions is the differences in those fillers.
The SEs you have listed are pretty much the most common ones felt by most so put your mind a ease.
Love n hugs. Chrissy
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I've only taken letrozole, so I don't know if there are differences between it and femara - however, I've now been on three different generics (just started the third a few days ago) - I believe that each of the pills has differences, as each one seems to bring with it some degree of differences in the SE's.
Regarding the hair loss - I went through menopause 10 years prior to my cancer diagnosis - and still had long and healthy hair - and lots of it. I did not have chemo, so no effect there, but letrozole... my hair AND my nails were just destroyed. My hair is much thinner than it used to be and it's also now short, as no matter what I did, I couldn't keep it healthy looking when long. I take Biotin religiously and that helps both my hair and my nails, though my toenails have weirdness they never used to have, my fingernails seem OK most of the time.
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Thanks chrissyb!
Kathec - I agree. Femara is a gift for my type of bc and after having genetic sequencing and chemo sentivity testing done, all the ai's work in my favor. I don't complain much because it's an important drug for me and I'm very thankful for it.
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Thanks for your kind comments! I've been going to therapy regularly and it's helping a lot! I think my problem was also that I was trying to discontinue Effexor and Percocet that I've been taking for over a month. I'm feeling much better now that I'm back on the Effexor and slowly weaning myself off of the Percocet.
Question....how do you distinguish between pains from Femera, chemo or something that may be more serious. My right leg has been bothering me for a while. The pain is deep inside my thigh bone and shin....it's not so bad that I can't walk though. I feel like such a hypochondriac
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Bonski68. Oh my! I know what you mean and had the same issue you have had. About 60 days after I started Femara, I started having sharp pans in my left hip and left knee especially when I would walk sideways. It felt like I had wrenched my hip/knee. Some days it was worse than others but I wasn't crippled from it and it didn't last all day long. First thought.....bone mets Aaaargh! I didn't stop exercising because I knew that Femara can cause joint pain, muscle aches, etc and had read on this thread how beneficial exercise is for that. While I did report this to my onc at next visit, the pain had lessened a lot and now it is non-existent. My recommendation is that you keep track of the pain so you can report it should it be persistent, get worse or changes character, but keep exercising! A gentle walk a couple of times a day is all it takes...although I like to do the Walk at Home workouts on YouTube. Low impact and you can do them rain or shine at home. If you are like most of us, you will see a gradual lessening of the discomfort.
Breast cancer turns us all into hypochondriacs! It is so maddening. So glad you are getting a handle on your depression and managing your meds. Good for you!
Good luck and keep us posted.
MsP
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Bonski, ask your onc about the leg pain. In my humble opinion, you should not need to be on percocet. If it hurts that bad, they need to figure out how to fix it.
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